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A Call for Hospice Reform: Nurse Practitioners Lead the Way

Last week a physician colleague expressed her concern about signing routine hospice admission orders for her elderly patient with end stage heart failure. The routine ‘as needed’ (PRN) orders included phenobarbital, pentobarbital, haloperidol, lorazepam, and morphine. “The hospice nurses know more about this than I do, don’t they?” she said. Yesterday, a longtime palliative care nurse told me she didn’t want to put her mother with end stage heart failure in a nursing home with hospice, because “they’ll just give her morphine and ativan. I want her heart failure managed.”

I worked as a hospice case manager in the community for eight years prior to becoming a nurse practitioner (NP) and have blogged in the past here about similar concerns. In my experience, most hospice nurses know a lot more about how to manage generic end of life physical symptoms than many physicians, particularly pain management and psychosocial symptoms/issues. Highlight generic. Physicians and NPs are trained to think pathophysiologically. We think via differential diagnosis. For example, as a hospice nurse (RN), I might have managed shortness of breath (SOB) in a patient with heart failure with low dose morphine. As an NP I might also look for subtle signs of fluid overload (JVD, bibasilar crackles, dependent edema) for possible diuretic adjustment and think about how the patient’s renal function might factor into these decisions. I might check if there are co-morbidities to consider (aortic stenosis, atrial fibrillation, myelodysplasitic syndrome/chronic anemia, COPD, Parkinson’s, anxiety, GI dysmotility) when thinking about meds (including opioids) in determining the source and treatment for the SOB. As an RN, if a patient became confused I would check for pain, constipation, and urinary retention. But then what? I might give lorazepam or haldol. These are likely pre-signed orders that may even be in the home for those “just in case” times. Convenient. As an NP, I might also think about infection, co-morbidities, polypharmacy, and medication side effects (particularly in the elderly.

Registered nurses are trained to alleviate suffering through diagnosis and treatment of human responses to actual or potential illness. We are trained to assess and treat based on holistic goals and to view the patient in the context of their defined family. Palliative care and nursing philosophy share a holistic approach to care that encompasses physical, emotional and spiritual concerns of the patient and family unit. It is no small wonder that nurses have been the foundation of community hospice work since its beginnings. Physicians are trained to formulate and treat medical diagnoses. Nurse Practitioners are, well, the middle children. We are nurses who have advanced training in diagnosis and treatment of medical conditions in addition to our foundational training. Our medical training is not as deep or broad as that of physicians. Nurse practitioners often pursue further training to develop an area of expertise.

None of us truly knows what we don’t know. Even the most experienced hospice nurses don’t know how their practice would differ if they had the advanced education and training of a nurse practitioner. Few physicians or physician assistants understand the level of training of RNs or LVNs/LPNs, nor their scope of practice. How could they? They’re not nurses. Only the nurse practitioner holds the dual training and, as such, is the perfect liaison for optimal collaboration between these two disciplines.

Surprisingly, nurse practitioners do not play a pivotal role in most community hospice agencies. Medicare requires that there be a physician medical director. Registered nurses usually function as the hospice case manager for the care of the end stage illness.

Hospice nurses are well trained in using medications to manage symptoms. Hence the array of the (all too often) ‘one size fits all’ order set of PRNs. This makes sense when the nurse is out in the home or on the phone doing her/his very best to assess and treat distressing symptoms at the end of life. It’s pretty difficult to track down the doctor of record, contact her/him, describe the situation, request an order and get it to the patient within a reasonable period of time such that the patient (and family) does not suffer for hours longer. Having pre-signed orders to use PRN can be a life-saver (no pun intended) at times. The downfall is the one size fits all practice. Shortness of breath equals morphine; anxiety equals lorazepam; confusion/agitation equals haldol.

There is continued grumbling among hospices and palliative care folks that patients are often referred too late to hospice care. However, at least in the case of patients with some non-cancer diagnoses, are they? Is our system set up to care for these patients optimally at the end of life? Sadly, I think not.
Happily, there is a relatively easy solution – use nurse practitioners who have advanced training in palliative care and (my bias) gerontology.
What if hospice nurses had easy access to a palliative care NP who had the training to assess and treat medically complex patients at the end of life? What if the hospice nurses had access to someone who understood their practice and could provide the appropriate education and support to improve their practice? What if the NP was available for home visits? Hospice nurses might practice differently. Patients would get better care. And health care providers might not be so reticent to refer their patients a little earlier.

The Medicare Hospice Benefit requires the provision of 24-hour nursing services and a physician medical director who reviews medical orders and participates in an interdisciplinary team group overseeing patient care. Why not a nurse practitioner and physician as co-directors? It makes sense. It’s time. And it’s the right thing to do.

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Comments

Couldn't agree with you more, couldn't have said it better. Hospice care needs to be individualized, chronic diseases should be managed with comfort as a goal, there is no "one size fits all". Thanks for continuing to advocate for improved hospice care!

Awesome post. Too tired and too much to do to leave a better comment. but this one is one of my favorite on Geripal this year. You have made a great case for all hospice disciplines not to be dogmatic and actually think through good medical and nursing practice.

I also believe that some of this will improve as home palliative care becomes more prevalent in the community. I think that many hospice programs are managing patients that should be receiving palliative care rather than hospice care. For example, CHF is a difficult diagnosis to manage. Cardiac meds, blood tests, x-rays etc. the list goes on and on. Many of us manage these patients but in all honesty, I don't think that most of us (doing hospice) truly manage CHF (or other chronic ilnesses) as it should be managed. There is pressure for the sustainability of most hospice programs to limit interventions, meds, bloodwork etc based on "focusing on comfort." In this respect I do see the need for outpatient/home palliative care, where the focus will begin to shift but management of chronic illness follow the standards of care. When the patient begins to significantly decline, despite maximal medical therapy the transition to hospice can occur. In this light, I agree with the author, I see Nurse Practitioners as a significant resource in the involvement of home/outpatient palliative care and hospice care.

I agree that hospice may at not manage CHF or other chronic disease as they sometimes should be managed. However, I still think that they probably do a better job than what is standard of care when discharging patients from the hospital. This standard of care usually involves a complete lack of post-discharge support, most notably no follow-up appointments with their primary care provider within 30 days of discharge. This results in a 1 in 4 chance of being readmitted in 30 days, and 2 out of 3 chance of being readmitted within the year, and a 1 in 3 chance of dying within a year.

It makes pretty good sense to me that adding some type of post-discharge follow-up support would help with these abysmal stats. This can be with hospice care, AIM programs, or some other hybrid. Should NP's be involved - absolutely. The biggest problem that I see is that physicians are not often involved in their patients care once they are admitted to hospice care. NP's can act as a bridge to improve the quality of care for patients with complex medical conditions.

I think you are courageous to have written such a piece and agree wholeheartedly with your sentiment. I am sure it will stir up some controversy particularly from hospice nurses and maybe the unlightened MD who may not have been exposed to NP's. I especially liked your points about hospice care being a little too generic (something that used to worry me when I was a hospice nurse) and "none of us truly knows what we dont know......hospice nurses ..how practice would differ if they had received NP education"

Hospices should welcome your suggestions in several aspects in that it may afford the patient better symptom control, enhance the publics opinion of hospice (particularly those who claim that all hospice does is "give morphine and help the pt to die") and also could keep pts on the program longer for revenue.

As a physician, I often find myself wondering what's so special about the MD. Wonderful post.

Just to play devils advocate a little bit, I do think there is value to a philosophy of care that masks symptoms until a patient dies, rather than working them up. SOB in CHF is a great example of where masking the symptom with morphine is likely not the best approach. "Terminal delirium" on the other hand is perhaps a little different. I suspect that many episodes of "terminal delirium" would be reversible in the short term if each of the many factors causing the delirium were addressed (O2, sodium, dehydration, renal failure). Perhaps a model of care where we are comfortable ignoring the many underlying factors and instead use large doses of symptom medications (antipsychotics in this case) is the best approach.

That said, I would vote for NPs to lead the way! (just as long as they weren't completely wrapped up in the traditional medical model).

My great grandmother just passed recently after a short battle with pneumonia. She suffered for hours in the hospital setting all the while crying and begging for help. It sickens me that we still let patients suffer in this manner. I think NPs are a vital resource for Hospice care.

I'm a palliative care/hospice NP who recently took a position as the second NP at an in-patient hospice unit. (The other NP who works on weekends and does follow up visits.) It's been interesting to watch the nursing and physician staff as they figure out what a hospice NP does and how to relate to a provider who's not a physician. The general feedback is the NP is the best of both worlds: able to handle the medical aspects of care but also more sensitive to the psychosocial ones. And, more sensitive to any issues the nursing staff may be having. The combination of all these providers improves all of our care. Here's hoping there will be more such combinations in the future!

I appreciate the thoughts shared and the goal of improved hospice care. Reimbursement needs to improve so that it's not an economic black hole to do the occasional lab and true palliation for non-cancer patients.

Great post on one of my very favorite topics! I, too, am a former hospice nurse, former director of patient care services, and current gero NP. I became a GNP so I could do better EOL care; I believe hospice care is quintessential nursing and that there is no better fit than a NP and hospice. Medicare rules must change.

I agree with many (all?) of you that palliative care needs to be reformed upstream and post discharge. I also think Dan makes a good point that we need to think about when it’s OK to aggressively treat the primary underlying cause of the symptoms and when it’s OK to mask them (that good old benefit/burden ratio), even with heart failure management. Yes, the system needs to change. Change is too darn sloooow if you ask me, but it’s happening. ‘Bridge’ and advanced illness management programs are increasingly utilized; the idea of patient-centered medical home is becoming (again) a hot topic; Acute Care for the Elderly (ACE) units are popping up. The fact that there are now so many palliative care physicians is a huge shift from ten years ago. While I agree that reimbursement and medicare regs for palliative and hospice care are antiquated, we cannot only grumble in frustration waiting for government or insurance companies to get this right. Hospice agencies are growing and struggling. They need referrals to survive AND want/need to provide the best care to grow their services and business. NPs – find out what the hospices/home care agencies perceive to be their limiting factors to reach their goals. Show them that you (we) are the app to meet their needs.

I am a NP certified in Gerontology and Hospice and Palliative Care. I have also worked in hospice for 12 years and went for NP training with the specific goal of working in hospice. I have been doing just that for the past four years. I practice in Texas and Arkansas and serve as a provider in conjunction with the attending. As part of my responsibilities, I visit all patients that I can provide orders on, I take call, make additional home visits, and actively review each patient prior to recertification. I feel since I see the patient in their home environment and have special training and experience in end of life care that I can provide a great service to our staff and patients in their end of life journey. I love what I do and am blessed every day with the staff, patients and family I get to work with.

Reimbursement for my service to our hospice however is limited. While Medicare states the NP can serve as attending, state law in Texas and Arkansas do not include NP in the definition of attending physician (that is their language). Medicare only permits reimbursement of NP when they are the attending (a bit of a conundrum for me). I know I help improve the quality of the patient's care with my immediate availability and familiarity with them and their home situation, but I am limited to prescribing Schedule III-V. So, here I think advancing nurse practitioner opportunities in hospice provision of care would be helpful. Just my experience and my thoughts. Thanks for bringing this up!

Kudos to my NP colleagues! I'm too old now (67) to go back to school, but I'm a clinical nurse specialist (close to NP but no cigar). As a nurse for 45 years and a former hospice director, I've been teaching around the country for 5 years for PESI healthcare. My husband and I have been to 38 states, and counting, doing this together. (He's my computer guru). I teach research based care of 9 non-cancer diseases. That would include Dr. Sarah Goodlin's CHF protocol for palliative as well as hospice care of the patient at levels 3 and 4 of the NY heart association. It's imperative that we look at the physiology of the symptom SOURCE and not just treat the symptom itself. With CHF, we have to control the weight, diet, and fluids,teach the family about fatigue,and know how to check for renal insufficiency. I could not prepare my presentations if the research was not available to me from the physicians and others doing it and publishing it. In addition to information from Journal of Palliative Medicine,I get the MP3's from the annual conferences, (if I can't get there) and listen to the presentations. From another presentation, I learned how to keep a patient awaiting liver transplant on hospice by working with the transplant team,using the MAYO MELD protocol,combining the care of the terminally ill patient with end stage hepatic failure with the hope of getting a new liver. The two are not mutually exclusive. And CMS has listed this as appropriate. I am looking forward to hearing this years' presentations. Keep up the good work, and know that we are out there trying to do the right thing so patients can have quality days, and more of them!I do want to mention another thought to prevent re-admission to hospital for those with no "safety net" and serious end stage disease. If we placed, on the discharge planning sheet, information from the Karnovsky or PPS as to where the patient is functionally, and whether they have a terminal disease, and whether they have had a pc consult, or important prognostic conversation with their physician, the "disposition" of the patient becomes a hugely important discharge recommendation. Impossible? We should do it before it's imposed on us....Regards to all. I wish I could be in Boston with you!

Wow! I had no idea that I was not the only hospice nurse that went to school to become an NP in order to give better care! This post completely sums up all the thoughts that I have had about hospice and palliative care. I have had patients that I knew that needed hospice but I was reluctant to transfer their care because as a palliative care NP, I was managing symptoms or disease process that I feared would be overlooked, misunderstood or overmedicated by the hospice RNs. Why did I have this fear? Because I was a hospice RN before becoming an NP. I have encountered physicians that don't understand my concern about this and as Patrice stated in her post, why would they? They aren't educated in our profession and they don't understand the difference between the different degrees that nurses and NPs have. I don't mean to sound unsupportive of the hospice nurse but in many hospices, I don't think that they are clinically supported by their institutions or their medical directors in order to learn about or manage the non-oncologic terminal diseases. In my city, the hospice nurse is often the only clinical team member that sees the patients as many medical directors are part-time and don't do even one visit to assess the patient, they only have knowledge of the patient from the IDT meeting. NPs need to be in hospice, I have believe this since I was a young nurse in 1996, and I believe it even more strongly so many years later. I just wished that the Hospice Medicare Benefit supported us more in that role. I will keep that faith that eventually, things will change for NPs in hospice.

Also, I want to thank all of the wonderful, enlightened MDs on GeriPal that do understand and support us on the forum. Your supportive comments have meant a lot to me. I love being an NP, am one of 8 nurses in my family and have wanted to be an NP for most of my life. On some days however, when I have had to explain the difference between an LVN and an NP and I again have to explain why I can't write the prescription for the opiates even when I am managing all other aspects of the care, or when I have read the statements that the AMA has issued to usurp our role, I wonder why I didn't choose the easier (in some respects), more socially understood role of doctor. When I read the supportive comments here that you have written in support of us, it energizes and sustains me to keep working hard with patients, to keep educating the medical students and to know that one day, others will understand and support the NPs that work in their institutions and in their communities, knowing that we want to work along with you to improve the care that we all give.

I agree with you that the role of an NP would be a perfect fit for palliative and hospice care. An NP would shine in a field who's primary focus is to address the the health care goals and needs of patient and family. APNs have many things to offer the emotionally challenged long-term care patient. It has often been said that NPs spend more time with their patients and that they take the time to really listen to them. NPs teach, guide and coach their patients in managing their health/illness and they involve them in the plan of care.It is what they are trained to do. Using NPs for palliatve and hospice care would provide continuity of care for the patient in the end stages illness which would be comforting to them and their families, as opposed to being referred to a different service during the last months or weeks of life. History has proven that APNs have always delt with barriers to practice in new settings and they are always the same: clarifying the APN role and scope of pratice in a given setting, re-imbursement issues and without these comes the inability to practice independently. Although there may be a way to work around these barriers, the key is change in policies to allow the growth of NP practice in the given setting.

I read with interest your blog post. I am a "veteren" hospice nurse from way back and have seen so many changes in this field. And I welcome, what I see, is a new way of looking at end of life care slowly emrging. I had the good fortune of working with NP's in the field when our agency "dabbled" with incorporating them in homecare. Simply stated, economics killed that program before it ever had a chance to blossom. Too bad, it provided our home care program an added sophistication and a higher level of practice that was enjoyed , not only by patients and families but by staff as well. I am trying in earnest to start a new Dementia program at our Hospice. Clearly, the "cookie cutter" approach is highly innappropriate for this population. I agree wholeheartedly, time to think outside the box.

I'm trying to find a post masters program for NP with a hospice/palliative care specialty. I find gerontology programs, oncology programs, etc but having difficulty finding a Hospice program. Does anyone have suggestions of universities that are offering this? I've been doing an internet search without a lot of results. (My Masters was obtained a while ago with an emphasis in critical care)

When my wife enter a hospice facility for pain management, she could converse, walk short distances with a walker, bath herself with a wash cloth, fed herself, sit up, watch TV, sit in a chair, look at a newspaper, etc. With a little help, she could take care of her basic needs. A few hours after entering a hospice facility, hospice managed to turn her into a bedridden zombie that can no longer do any of these things. Since she has been here, hospice has fed her almost nothing and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. Of coarse they blame this rapid, almost instantaneous, decline on her. Hospice claimed that it was completely innocent of this immediate decline. After I complained, hospice reduced the medication, so now my wife can tell someone that she is thirsty, hungry, or in pain. Unfortunately, hospice had weaken her so much that she remains an invalid. Hospice’s policy seems to be to get the patient to the morgue as quickly as possible. It seems to be practicing a form of covert euthanasia. I am convinced that hospice has taken days if not weeks off my wife's life. Don’t let hospice get its hands on anyone you love — especially at one of its facilities.

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